New to this

Hi all,

I am new to this and would appreciate your feedback. About six weeks ago I had an unusual episode at work which involved confusion, slurred speech, blurred vision and dull headache. Checked my bp and at the time it was very low for me as I usually verge on the good to higher side..... Went to the doc who told me I had very brisk reflexes and sent me for an MRI. Results came back that I have at least one anuerysm on the right side (where exactly I do not know as of yet). I haven't seen any neurosurgeon as of yet as they are few and far between.... So at this present moment in time I am no better off than I was before I discovered it! Am waiting to see a neurosurgeon privately but that will be another month at least.... I am trying to remain cool and relaxed but sometimes this is hard... I know I am very lucky that they have discovered this before it has ruptured and am thankful for that..... the other part of me worries at what stage will it rupture, how big does it have to be, am lacking in information really....... I don't want to burden my family with too much so would be grateful if you could give me any advice whilst I am waiting........... Many thanks in advance..............

Hi Anna,



Welcome to BAF.



Unfortunately, the answer to you questions can be summed up as “no one knows for sure”. There are so many different factors that determine whether you will have an aneurysm and whether/when it will rupture. These include heredity, lifestyle, overall health, size and location and the “will of God”.



As you read the stories on this site, you will see very wide variations in experiences.



What I can recommend to you is that while you are waiting to see the neurosurgeon, please do as much investigation about anuerysms as you can, develop a list of questions for the doctor, arrange to have someone you trust go to the appointment with you. This is an excellent site for information and support.



If you are a praying person, please pray for the Lord to guide you during this journey. I pray that you will find a competent and caring healthcare team to treat you.



Carole

Hi Anna,

This will be a journey for you. Carole is right about knowledge. It will help you to make decisions with your neuro for treatment. And believe it or not, it will make you stronger. It is always a shock to find you have an anuerysm, and it is so foreign. So do your reseach and know that there so many here and around the web that will know your journey

and will be out there for support.

Anna...this is how the medical system seems to work...they are so concerned to find out what is wrong...and then once they do...they drag it on...and our fears almost kill us...I have seen it time and again with aneurysm's, people diagnosed with cancer, etc., I started my socalled journey with the worse headache and bad Bp on Sept 1st of 2010...many things in btwn happen...but Sept 12th after collapsing it was found that I had a 9mm Basilar tip artery aneurysm and another behind my left eye...they felt the 9mm was leaking...well Guess what? surgery didn't happen until November 30th of 2010...it was the first time in my life I had to ask a Doctor to give me something to help the anxiety when it was so bad...because too much time in between...I found myself walking twice a day with my dog...the exercise would help my anxiety...I cleaned ever closet and room in my house...anything to keep my mind from thinking...keep in touch with your original Doctor who found the annie and ask all those questions you just asked us...the important thing .. is to stay calm (I laugh a little here), no heavy lifting, keep Bp down, no smoking, etc., be very vigilant about yourself...

You have my thoughts and prayers ... ~ Colleen

Hi Anna! The waiting is very hard, both for information and for any procedures that we need. While I waited someone suggested reading a book called "Brain aneurysms and vascular malformations, a guide for patients and families" by Dr. Eric Nussbaum. It helped me because it explained what my aneurysm was, what is known about them and it explained about interventions. It did this in a way that did not scare me. After a great deal of information and consulting I decided to get one of my aneurysms clipped on May 8th. That procedure went extremely well and at 8 weeks or so, I feel fine. My other aneurysm is on a "watch" . I am telling you this because it is important that you know that every aneurysm and every patient is evaluated uniquely. You do need to find a reputable, experienced doctor that you trust and feel confident with, because they will help you decide what will be best for you. Know that you are not alone. Hugs for you Anna, waiting is so hard. Val

Thank you all for your kind wishes and thoughts..... I am feeling more confident seeing your words here in front of me...... what is hard for me is that I am worrying my family and that I do not want to to! Am tryingto remain positive and upbeat for them as well as myself.... We have had a lot of loss and sickness and really I dont want to put them in that position again...... or me really but what can you do!!! Thank you all most sincerely - every comment helps a hundred fold and I appreciate your feedback so very much.......

Hi there Nikki,

Thank you for that! Guess I will be better once I have actually talked with a neurosurgeon - be about three weeks now I hope! So far I haven't really seen anyone who has enough knowledge to advise me but am going to be positive! How were you after getting yours coiled - was it very large?.....sorry for all the questions, I am not trying to be nosey or personal ( if you know what I mean)!!!

I just have soooo many questions....... Thank you for that I so appreciate it!! Bless you,

Anna

Anna, I think most of all while I waited I wanted to hear from many others that had had surgery. I needed to hear that they made it through and were well afterwards. I just wanted to tell you that it is 8 weeks after the clipping and I feel really good. I am off all medication now, and I am back to walking my 3 miles a day. My aneurysm was also on the right side, it was behind the eye close to the optic nerve. <3

Ah that is great to hear - am so glad that you are doing well! thank you for that - I so appreciate it! I have been informed that I also have a small blood clot in the brain - seems to be a lot going on up there for some reason - I will stay positive though and stay in touch with you all!!! thanks again Nikki,

Anna

Hi Valerie

That is wonderful to hear that you are doing so well! And thank you for your kind words I really do appreciate it........

Thank you,

Anna

Hi Anna, a big welcome to this site, there are many of us on here who are grateful for it's existence, according to my surgeon I had mirror image aneurysms one either side of my head, the first burst in Feb 2011 which was coiled (who knows why one burst and the other didn't) and the second I waited a year to have coiled and stented, it was a much quicker and less stressful procedure the second time round and recovery has been better, I agree with the others make list of questions you need to ask and take someone for support, if you are a smoker try and stop and also don't lift anything heavy watch your blood pressure and try and keep your stress levels down, I hope it is soon sorted for you, the anxiety is worse than the reality sometimes, take care, Jill

Hi there Gill,

Thank you so much and am so glad to hear that you are doing so well! I have to say that this site is amazing and has managed to calm me down a lot really!! It seems along with my annie I also have a blood clot so am waiting for meds to sort this out also! Am hoping to see a neurosurgeon next week so I will have my list of questions ready for him and hopefully he will put me at ease with all that is going on at the mo!!!! thank you again for your kind words I really do appreciate it!

Take care and chat soon....

Anna

Hi Anna

Welcome to BAF your very welcome I’m actually typing from my hospital bed …I had a stent and 6 coils put into my nneurysm on Friday it was the first time the new stent had been used in austrailia and my procedure was very successful…I’m waiting for my surgeon to come hoping he will send me home I feel great …I found out around Xmas about mine I had headaches and blurr vison and when I went to see my surgeon it scared me but there was a few problem along the way just that the procedure had to be cancelled a couple of times once cus the neck was to wide another cus the stent didn’t arrive and finally I’ve had it done and honest I feel great hope you get something from this .

Thanks jimmy

Hi Jimmy

That is wonderful to hear and am so glad that you are doing so well - that is just fantastic! Am truly so delighted for you. thank you for sharing this with me - it definately makes me feel more upbeat about the whole thing - thank you so much Jimmy and I do hope that you get home soon. Stay in touch if you are feeling up to it! I wish you a very speedy recovery,

Thanks again,

Anna

Hi Anna

The surgeon who was at my procedure has join this forum I was talking to him and he was on here last night in the main chat room chatting with us he carrys out 150 + coiling and stent procedures a year his name is Jason Wenderoth I’m sure if you want to ask him anything he will try and help you look on his page .

Thanks jimmy

Hi Anna. Jimmy mentioned your situation. Do you have any pictures of your aneurysm you can upload?

Hiya Jimmy,

That is fantastic Jimmy thank you! How are you feeling? I believe that you are a singer!!! Ron k mentioned it to me when I uploaded my pic!!! Cool!!! How are you doing after your surgery - I do hope that you are doing well and feeling good. Keep us posted if you get a chance..

Take care,

Anna

Hi there,

How are you? Am just in the process of uploading some mri images although they are quite hazy! It seems I may have a thrombotic anuerysm on the right side but am awaiting an angiogram to get a clearer picture! Any advice would be greatly appreciated. Many thanks in advance,

Anna

Hi Anna,

Once you know where your Annie is you can then find the neurosurgeon who deals with that area of the Brain. They will do their own CT'S and MRI'S and will advise you what the best treatment options are for you. I was treated in the UK at the hospital for Neurology and Neurosurgery in Queens square, London. It is the home of the Institute of Neurology and neurosurgery. I opted to treat mine with a pipeline flow diversion stent.

Hi Anna,

It is important that you find a neurosurgeon that specializes in your type of annie. Inaddition, go for the hospital that is most experienced in treating it. The outcome will be better. You said you are getting it done privately so it should not take long for an appointment. Make sure you get someone who is acredited to the NHS.